Why medical records stress me out

How many of your own medical records do you have?  Really think about that.  These are pieces of paper (or maybe electronic files, if you’re lucky) that delve into various aspects of your health from the day you were born.  They are from every practitioner you’ve ever seen.  How many do you really have?  And how do you find any particular piece of information within them?

It bothers me sometimes that I have so few of my medical records.  Of course, I don’t know how to quantify this, but I know I’m missing a lot.  There are the many doctors I only saw once or twice.  There are a few doctors who I saw a bit more.  And I no longer remember who any of them are!  There’s just no way to get those records now.

Then, for each practitioner, there’s the matter of getting my hands on every record from the time I started seeing them.  For the practitioners I am still seeing, this means constantly asking for new copies of records once or twice a year.  For many people, this costs money. I can get some of my records for free, but I pay for others.  Frustratingly, I can arrange for specialists to send copies to my PCP for free, but I have to pay to get copies for myself.  Why is this?  I think it’s wonderful that the law (at least in Massachusetts) requires that PCPs receive all medical records at no charge.  This is important to maintaining patients’ health.  At the same time, though, I think that patients need to be responsible for their own care, and that those who want to be responsible for their own care should have free access to their own records.  There should not be any roadblocks to this.

Asking for medical records is frustrating, but I am completely mystified that I can not get copies of any lab work without going through my doctor’s office.  I get some testing done through the doctor’s office’s lab, but some of it is done through an independent lab.  I called that independent lab to ask for a copy of my test results recently, and they said that they were not allowed by law to give me those results.  This was my blood that they tested.  This is my health they checked.  But I can’t know the results?  Really?  I understand that they don’t want uneducated people to panic when they get abnormal results, but what about those of us who are educated about our conditions and who want to take charge of our own healthcare?  I should not have to wait an extra week to get my doctor on the phone, or maybe even have to go into the office and pay an extra copay (if I’m lucky enough to have insurance, which I don’t have the moment) just to find out that my TSH levels have changed.  That’s absurd.

And having copies of my medical records isn’t handy for just my own use and knowledge.  Every time I see a new doctor, it helps to bring my own records instead of waiting weeks or months to have another practitioner send them over.  With the insurance appeal, SSDI application, and Medicaid application, having my own records speeds up the process by weeks or more.  Not having the records slows down these already-painful processes.

Of course, let’s assume you actually have all of your medical records.  What do you do with them?  I stopped counting a long time ago, but I know that I have many hundreds of pages of records.  It could easily be over one thousand pages.  Yes, 1000 pieces of paper containing both important and unimportant information.  (The picture above shows some, but not all, of my records.)  While almost all of my records exist in computers at doctors’ offices, I am not able to receive electronic files.  At one point I considered going through my records and entering all of the information into a searchable spreadsheet, but it was just too overwhelming.  Then I figured I would do the same thing for only my current records, but I couldn’t figure out how to set it up in a way that would actually be useful.  Analysis paralysis.  Shoot.

This stresses me out!  I know that there are important tidbits in those pages.  I know that it would help to have access to every record of mine that exists, and to have it in some useful format.  I just don’t know how to make that happen.

When I was first diagnosed with an autoimmune condition it was a real shock to me.  I had been having symptoms for 11 years at that point, and this seemed to come out of nowhere.  My ANA levels were incredibly high.  At the first appointment, I gave my new doctor a copy of my old medical records.  I can’t imagine how long it took him, but he went through those records and found two previous ANA tests that were high.  I wonder if there were others that he didn’t find in that mess of papers.  The two previous tests weren’t high enough to diagnose me, but they should have been flagged and watched.  Someone should have been continuing to test those levels.  My PCP back then was less than useless, and he never coordinated my care.  No one told me about the tests.  Back then, I didn’t read my own test results, and since no one had mentioned autoimmune conditions to me, I didn’t know what to watch for anyway.  Now imagine if this had been different.  What if some of my other doctors could have easily done a search in an electronic file and seen those high scores?  Or what if I could have done it myself?  I could have been diagnosed years sooner.

There have been a few other times that I have read parts of my medical records for one reason or another, and found surprising notes.  I learned that a doctor thought I was overly emotional, and that was the reason behind my pain.  I learned that something was found during surgery which the doctor never mentioned (and I have witnesses that he didn’t!)  I discovered suspicions that doctors had about my conditions, but which were never tested (and some of them turned out to be right!)

What’s done is done, so I am not dwelling on that.  What I am dwelling on is the fear that it could happen again.  I have dozens of blood tests run every year, plus other tests.  What if I am missing something?  I won’t rely on the doctors anymore.  I need to keep track of it all myself.

What do you do?  How do you keep track of your records?  Do you have copies of everything?  Do you create electronic files? How do you organize it all?  I would love to get ideas from everyone!

8 Responses to Why medical records stress me out

  1. I keep a running folder of all my test results, but not my full medical records. If one of my doctors wants the full records, they can go through the official channels to get them, but otherwise I just give them my stack of test results to photocopy. That also helps to weed out unhelpful notes from doctors I previously fired for being idiots. The blood tests are what matter, not the ramblings of idiots unfit to treat me. I try to keep the records in chronological order based in when the test was done, and if you’ve got a lot of records, it can make sense to separate them into one folder per year, so you can easily find an old test.

    The key to all of this for me, though, is a portfolio I started keeping when I first got sick. There’s a pocket for loose papers, which is why I started using it in the first place, but there’s also a blank pad of paper in there that I write down all of my appointment info on — date, time, doctor’s name, address, phone number, etc. When a sheet gets full, it goes with the rest of the records. I have these dating back to 2002 or so, and it’s allowed me to, for instance, quickly find out where and when I’d had my last echo cardiogram (Sept 13, 2005, in an office that has since moved but still has the same phone number — took me all of 5 seconds to find that info when I needed it). Having that info easily obtained made it so much easier when my new PCP wanted to see my old heart test. The records will be sent over by the clinic, I just needed to know how to find them.

    I also think it’s important to try not to stress about these things, especially when you’re living with autoimmune diseases, as stress makes the autoantibody attack so much worse. You definitely need to be involved in your health, but you should also have a reasonable expectation that medical professionals will act professionally (and if they don’t, you should fire them) and let them do their jobs. Keep the most recent tests on hand, ditch the psychic and physical weight of old doctors’ notes, and make a summary for anything more than 5 years old, rather than toting around all those pages. As long as you know you can find the who/when/where of previous doctors and test results, I think it’s possible to live pretty stress free on this front, even for full-time patients like you and me. 😉

    • chronicrants says:

      Wow, it sounds like you have a system that really works well for you! How do you find something like an echo cardiogram so quickly amongst so many pages of tests and notes? Do you keep them all in chronological order together, or do you divide them out by doctor? I guess part of my problem is having docs who aren’t so good about sending records, but I just fired the one who was the worst offender, so many soon I’ll be able to trust them to do this stuff for me. That would help a lot!

      • Well it was easier because I didn’t actually find the echo cardiogram records, just the sheet where I wrote down all my appointments. I have maybe 5 pieces of paper with all of my appointments going back to 2002 (same line used multiple times when I went to a doctor more than once, just added another date at the end if the line). I remembered that it was sometime after moving here, so that narrowed it down to after 2004, and I knew it wasn’t this year or last year, so before 2011. After that I was able to quickly scan my old appointments list until I found the appointment with a cardiologist. The actual records are still at their office, but I think there are films involved (like with an MRI or xray), so I’ll let my old cardiologist and my new PCP sort out mailing the records.

        My point was just that if you keep a chronological list of when you saw each doctor, with their contact info alongside the appointment info, then it’s pretty easy to contact them to send records around, even seven years after the fact. I think keeping any records you do keep on hand in chronological order helps too, as I personaly think more in terms of when a new symptom started or when I got a new diagnosis, what time of year it was/where I was living/etc, and not in terms of cardiology versus neurology versus rheumatology, much less remember each of the 25 or so specialists I’ve seen in the last decade. The appointment list just acts as sort of a table of contents to quickly find the records I need, whether I have them on hand or whether I need to contact an old doctor to have them sent over.

      • chronicrants says:

        Thanks! I may have to copy parts of your system 🙂

  2. It is a scary thought that such personal records are in the hands of such strangers who can therefore know more about your own past than you do. But my big thing is, if you had all these, would it really do you so much good? All those bad diagnoses, all those irrelevant tests that proved nothing. Sounds like it would end up being clutter and not of much use.

    • chronicrants says:

      The idea is that new docs need old records, and I don’t always want to wait a month or more for them to receive the records. Plus lawyers and insurance companies and social security and medicaid all need records, and providing copies myself can save me a month of waiting. Also, I can’t trust my docs to keep track of everything. I can’t tell you how many times a doctor has asked if I’ve had X test done in the last year and what those results were. I’ve had my liver enzymes tested 3 times by 3 different doctors all because they didn’t have access to each other’s records. What a waste! I’d rather just show each one the test results and save myself (and them) the hassle and expense. Ideally, each doc would have access to everyone else’s test results, and I could also see them online, and then I wouldn’t need the paper copies, but so far, the system hasn’t evolved that far.

  3. rachelmeeks says:

    I think things are beginning to turn more to electronic files, and that’ll help. But I totally agree, I hate especially that I can’t get test results!!! Infuriating.

    • chronicrants says:

      Oh yes, you’re right, not being able to see my own results is the worst! It took me too many years to realize that when the “normal” range is 2-20 and I’m at 20, the doctor will just say it’s normal, and won’t think that maybe they should try to get me into the middle of the range. And it took me longer to figure out that the “normal” range isn’t always (usually?) the ideal range anyway! It’s so important to see and analyze our own results!

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